Between the ages of 26 and 29, I experienced no fewer than six burst ovarian cysts.
At the time, my endometriosis was completely out of control. These cysts were a part of the chronic pain I had to learn to endure over the course of those years.
If you’ve never experienced a burst ovarian cyst, I can tell you it’s one of the most painful things a person might have to experience. It starts with an ache, usually in your side or back. At first, the pain is manageable enough. It almost feels like you’ve pulled a muscle or have a stitch in your side.
But all too quickly, that pain increases, radiating from back to front until it feels like you’re being stabbed right in the ovary.
And you know it’s your ovary. At least, I always did. It’s such a unique and undeniable pain, you only have to experience it once to know exactly what’s happening anytime you go through it again.
Unfortunately, convincing emergency room (ER) doctors of what you already know is never quite so simple.
Every time I had a burst cyst, the pain would leave me vomiting, struggling to breathe, barely able to walk.
I’d go to the hospital seeking relief, but also help: Burst cysts can lead to ovarian torsion, when an ovary twists around the tissues that support it, which can get very dangerous very fast.
ER visits were my way of trying to stay alive.
As any woman with a chronic pain condition will tell you, doctors aren’t always quick to believe a woman in pain. This is a known phenomenon: Women are treated differently than men when complaining of pain in medical settings.
I’ve seen it firsthand.
I’ve been to the hospital at the same time as three different men who have presented with symptoms of kidney stones. All three were given pain medication immediately, long before doctors were able to confirm what was going on with them.
While I showed up at those same ERs, doubled over in pain and knowing full well what was going on, I was always treated like a drug seeker.
Doctors would eye me suspiciously. Medications would be withheld for hours, until painful and invasive transvaginal ultrasounds could prove what I was saying to be true.
And even when those tests confirmed for the doctors that I knew my body as well as I insisted I did, there was no sympathy for my tears. No show of humanity in the face of my pain.
And I’m certainly not alone in that.
Over the years, and as a result of consultations with both my regular OB-GYN and my therapist, I learned how to better maneuver this flawed system; how to temper my pain, telling doctors I was at a 7, even if I felt like I was at a 10, just so they would hear me out before immediately writing me off.
I developed a bit of a guide for getting through those trips as unscathed as possible. Here’s my set of tips I’ve shared with plenty of women newly diagnosed with endometriosis over the years.
Carry your medical history
I kept a notebook where I put all of my medical files, everything from my five surgeries and past ER visits.
I even had a note from my doctor confirming my diagnosis of stage 4 endometriosis as well as her home number if ER doctors wanted to consult on my case. This at least provided legitimacy to my claims when I turned up sobbing in pain.
Bring someone with you
At the height of my battle with endometriosis, I was a single woman living alone. And contrary to what some ER doctors may have thought of me, I hated being seen as overly dramatic, or putting the burden of my care on anyone else.
So, those first few trips to the ER, I traveled alone. I took cabs and told no one.
I paid dearly for those stoic decisions. Doctors assumed I was just trying to get drugs. I learned eventually that I needed an advocate with me when I turned up at an ER.
I was in too much pain to communicate effectively, and I couldn’t fight for myself in that state. Having a friend who knew my history come with me meant having another voice in the room standing up for me.
And that’s invaluable when you’re in a situation where doctors aren’t listening to what you have to say.
“I think it’s really important that someone is there encouraging you, rooting you on, saying you’re not alone, helping you feel stronger and more powerful.”
— Tia Mowry, diagnosed with endometriosis in 2006
Ask for a female doctor
I don’t want to disparage male doctors. My amazing endometriosis surgeon is male, and he’s one of the most knowledgeable experts on endometriosis that I’ve ever met.
But in my experience, his compassion toward women struggling with this disease is unique. And all of my most traumatic hospital visits involved a male doctor who didn’t believe I was in as much pain as I said I was.
I’ve had bad experiences with female doctors as well, but in general, I’ve found them to be a better bet than men in these situations.
This isn’t foolproof, of course. Most hospitals have spent decades trying to cut down on prescribing patients with unnecessary pain medications, and for good reason: The opioid crisis in this country is very real.
But so is endometriosis pain. There have been times when prescription pain relievers are the only way to get through the pain I’ve experienced.
I eventually spoke with my doctor about the experiences I was having in ERs. She ended up prescribing a prescription for a very small number of strong pain relievers for me to keep on hand.
I kept them in the back of my medicine cabinet for those just-in-case days when the pain is too great to handle. I only had to reach for them twice while experiencing burst cysts that I ultimately decided not to go to the hospital for.
That’s not a decision I would ever recommend anyone else make. In my case, I felt like I knew my body well enough to make that call. I just wasn’t up for the torture I knew an ER visit would be.
It’s been nearly a decade since I’ve needed anything that strong. Excision surgery with one of the top endometriosis experts in the country literally gave me my life back. As a result, I stopped having to make those uncomfortable trips to the hospital.
A few years ago, I found that bottle of pain relievers in the back of my medicine cabinet. It still had three pills in it, long since expired.
I pushed them into a glass jar I’d filled with bacon grease, screwed the lid on, and threw it all away.
I hope I never find myself in that position again. But even more than that, I wish no woman ever did.
It’s not OK that our pain is treated so differently from men’s. It’s not fair that we have to fight so hard to be heard. But knowing what to expect, and preparing yourself with the tips above, are things you can do to help make the experience as painless as possible.
In every sense of the word.
Leah Campbell is a writer and editor living in Anchorage, Alaska. She’s a single mother by choice after a serendipitous series of events led to the adoption of her daughter. Leah is also the author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah viaFacebook, herwebsite, andTwitter.